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FEBRUARY 2017

QUESTION 1

QUESTION:
I'm working with a girl who is 16 years old. She was adopted from Belarus and came to Sweden as a 2-year-old. Very little is known about her biological mother, but what we do know is that the girl was born 1.5 months too early, was brought in to the hospital when she was around 1 week old - infected with Salmonella. The mother left the girl at the hospital where she spent around 1 year, after which she was subsequently sent to live for about 1 year before she was adopted to Sweden.

The girl has had major difficulties her whole life, she hasn't been able to function well in preschool or school. She has ended up in violent conflicts with both age peers and adults. The girl's inability to be at school or preschool has led to her mother being unable to work and instead staying home to care for her. In her teens, the girl began acting out at home, smashing furniture and attacking her parents. Ultimately the home environment became untenable, leading to the girl being relocated away from home. She has been placed in both the Swedish National Board of Institutional Care (SiS) and in open homes for care and accommodation (HVB). The girl sometimes acts out and becomes very violent, primarily towards the staff, and she is often given isolated care as she is considered unable to be around others her age. Neither social services nor her parents know how to help the girl - various types of intervention have been tried over the years, but none have really yielded any significant results. We obviously don't want her to have to be given isolated care all the time. The girl has previously been diagnosed with ADHD and autism.

The parents have wondered whether the girl might have FAS - they have attempted to get her examined at the Astrid Lindgren's Children's Hospital, but were told that, since one could not be certain about whether the girl's biological mother had abused alcohol during her pregnancy, they would be unable to perform any examination.

What do you think? Could any such examination be performed on the girl in question? How would one go about it? And so on...

ANSWER:
Thank you for your question concerning a girl with autism and ADHD whose parents are wondering whether she might have Foetal Alcohol Syndrome (FAS). They expressed this concern to someone at a children's hospital, who in turn, according to your information, replied that any assessment of this matter was contingent on knowledge of alcohol exposure during the pregnancy.

This is of course not the first time the question is raised as to whether a single specific case has FAS or not. On the contrary, both people affected and their friends and families seek out help with diagnosis and habilitation/treatment in various ways. Examination and diagnosis are crucial in order to gain understanding as well as the right kind of support and treatment. In fact, initiatives and proposals have been presented to decision makers at the central level in Sweden, regarding the importance of a "second opinion" institute where one would be able to get help with such an examination.

According to diagnostic guidelines, FAS can be diagnosed without any documented exposure to alcohol; the presence of physically distinctive facial features, growth abnormalities, specific injuries to the central nervous system and cognitive/behavioural disorders, is enough to make the diagnosis.

The account detailed above presents alcohol exposure as a significant risk factor, based on how you describe the circumstances surrounding the patient's first two years of life. The adoption situation itself may in addition be an expression of an underlying social disaster - where we know that alcohol abuse is a frequent occurrence.

You mention in your summary, before your question, that she has been examined earlier and that these examinations found her to have the developmental disorders ADHD and autism. We cannot be sure what the basis for these diagnoses are, but what we can say is that both of them are overrepresented in cases of FAS. The kind of behavioural difficulties you describe is also compatible with FAS.

MAGNUS LANDGREN


QUESTION 2

QUESTION:
I am an adult with poor working memory. I was wondering if there is any treatment available to help me ?

ANSWER:
Thank you for your important question. Working memory was previously believed to be something one was born with, which could not be influenced. However, several studies have shown that the brain's malleability (plasticity) to a large degree remains throughout life. Without this plasticity it would not be possible to train one's working memory even during one's adult years.
Some information about working memory, which is considered closely linked to executive functions. Working memory is closely related to short term memory, but working memory is a larger system that makes use of the central executive, in order to focus, split or shift attention, as well as to block irrelevant information and keep impulsive actions in check through inhibition.
Non-verbal working memory refers to the ability to keep information available in one's mind not in the form of words but instead by using one's senses (holding on to images, sounds, tastes, tactile sensations and scents in one's mind). Our non-verbal working memory for example gives us a map leading to the future that we desire, a powerful tool called imitation, the ability to predict the consequences of our actions, self-reflection, the ability to plan our time (sense of time) and the ability to delay gratification.
Verbal working memory refers to the ability to use one's inner voice and contributes to the ability for self-control - being able to engage in an inner dialogue with oneself. Our verbal working memory enables us to describe and observe events and situations and thereby contributes to our ability to solve problems. Using verbal working memory we are able to create and follow rules and plan, engage in moral reasoning, and remember things that we have read silently to ourselves.
There are more correlations between working memory and other skills, such as attention, learning ability and general intelligence. People can, by training to improve their poor working memory, strengthen their other cognitive functions as well. This makes your question regarding whether there is any treatment for adults with poor working memory extremely topical and important.
There are many companies claiming that their products help to improve one's working memory. In order for a training programme to be considered effective as treatment, it is crucial for it to create generalisable and lasting/permanent improvements in other areas than only the specific areas being trained. Cognitive training has been shown to provide lasting improvements with regard to the specific area being trained, but as for generalisability, the results are not as conclusive.
There is a computerised training programme, Cogmed, developed in Sweden, which has been shown to improve the working memory of not only children with ADHD and children suffering from impaired working memory for other reasons, but also that of healthy adults and adults with acquired brain injury. The programme itself consists of a series of web-based exercises.
Several large compilation studies published over the last few years have been unable to find support for different training programmes providing positive effects in other areas.
However, although the generalisation effect might not be very significant, it may have an effect on mental stamina and focus.
There are also alternatives to regular full-on working memory training programmes. One important aspect can be to apply a goal-oriented approach in everyday life in working with certain strategies and adjustments. Developing routines of making lists, writing things down or using smartphones or suitable cognitive aids in the right manner can be a few ways to compensate for working memory difficulties.
If you know what type of working memory difficulties you have more specifically, it will also get easier for you to onderstand what type of treatment measures that would suit you best in terms of coping, strategies and compensation.

Here are some tips for you:
- Some popular working memory trainig programmes: Cogmed QM, Neuronation, Cognifit, Lumosity and Minneslek Flex.

- A book by Russell Barkley: Taking Charge of ADHD, Guilford Publications, 2013

TAINA LEHTONEN
 


QUESTION 3

(i) QUESTION:
Has any link been detected between Asperger's syndrome and fibromyalgia?

ANSWER:
You bring up an important question. Even though it is currently hard to find clear evidence of this link, it likely does exist. The link is not just between fibromyalgia and Asperger's syndrome, but the entire group of ESSENCE conditions (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations, Gillberg 2010: developmental disorders including autism and ADHD and language disorders). A small study in the Netherlands found a high rate of ADHD among fibromyalgia patients (1). In another small study, substitution with the protein L-Carnitin turned out to generate positive effects in cases of autism (even though this is not an established treatment for autism: more studies with larger patient groups are needed in order to confirm this effect) (2). The same treatment has also been tried on treatment of fibromyalgia and chronic fatigue syndrome, and shown positive effexts (3), which could mean that there are similar underlying mechanisms/deficiencies in the brain when these diagnoses are involved. Ehlers Danlos syndrome, a hypermobility syndrome that can lead to conditions of chronic pain, has also been associated with fibromyalgia (fibromyalgia has been discussed as potentially being a form of Ehlers Danlos syndrome). A recently published study shows that connective tissue problems such as Ehlers Danlos are common among children with ESSENCE difficulties (4). Still another small-scale study handed out questionnaires on ADHD symptoms to a group of patients with some kind of central pain, i.e. pain originating from an injury to the brain or spinal cord (5). More than one third of the patients in the study met the criteria for ADHD. We know from previous research that people with chronic pain have an overreactive autonomous nervous system. This nervous system controls our breathing, among other things. An overreactive autonomous nervous system contributes to ADHD symptoms. Clinical experience indicates that in cases of chronic pain, taking medication for the ADHD symptoms also leads to reduced pain perception.
As you can see, there is much to indicate that there is a correlation between developmental disorders and different chronic pain conditions. More research is needed in order to understand the nature of the link between fibromyalgia, chronic fatigue syndrome, connective tissue diseases, and ESSENCE.

(ii) QUESTION:
Can a concussion (or several) be a cause or contributing factor behind fibromyalgia?

ANSWER:
I have found a study performed on 268 patients, where they examined the potential link between so-called whiplash injuries and the occurrence of fibromyalgia. Whiplash injuries refer to when the neck is subjected to sudden force, flinging the head from one extreme position to another (hence their illustrative name, the neck being thrown around like the lash of a whip). This study was unable to confirm that the trauma could increase the risk of fibromyalgia (6). I do not know of any study showing a correlation between repeated concussions and fibromyalgia.

References

1: Derksen, M.T., Vreeling, MJ., & Tchetverikov. I. (2015). High frequency of adult attention deficit hyperactivity disorder among fibromyalgia patients in the Netherlands:should a systematic collaboration between rheumatologists and psychiatrists be sought? Clinical and Experimental Rheumatology, 33, (1 Suppl 88), S141.

2: Geier, D.A., Kern, J.K., Davis, G., King, P.G., Adams, J.B., Young, J.L., & Geier, M.R. (2011). A prospective double-blind, randomized clinical trial of levocarnitine to treat autism spectrum disorders. Medical Science Monitor, 17, PI15-23.

3: Leombruni, P., Miniotti, M., Colonna, F., Sica, C., Castelli, L., Bruzzone, M., ... Torta, R.G. (2015). A randomised controlled trial comparing duloxetine and acetyl L-carnitine in fibromyalgic patients: preliminary data. Clinical and Experimental Rheumatology, 33(1 Suppl 88), S82-5.

4: Baeza-Velasco, C., Grahame, R., & Bravo, J.F. (2017). A connective tissue disorder may underlie ESSENCE problems in childhood. Research in Developmental Disabilities, 60, 232-242.

5: Tennant, F. (130) (2016). How common is attention deficit disorder (ADD) in chronic pain patients? Journal of Pain, 17, S8.

6: Ferrari, R. (2015). A prospective study of the 1-year incidence of fibromyalgia after acute whiplash injury. RMD Open, 1, e000007.

ANNE-KATRIN KANTZER


QUESTION 4

QUESTION:
I have a question regarding my son who is 3 years and 4 months old. He was examined between ages 2-2.5 and then given the diagnosis atypical autism.

Shortly after his second birthday we noticed that he could "read" certain signs around town, primarily names on subway signs in Stockholm, such as Skarpnäck and Bagarmossen. He would soon after demonstrate that he could also decode these words when they appeared on e.g. road signs and later in small typewritten text. At the age of 3, we identified that he was able to read at least 50 words "in blocks". He can also spot them in the middle of texts and in similar circumstances. Almost all the words he can recognise are names of subway stations, but he can also "read" some other words.

What I am wondering is how you can explain that this ability of his can be so advanced, even while he does not seem to understand other similar code-breaking, such as shapes, puzzle pieces, puzzles and the like.

In so many other respects he comes across as being at a significantly lower age level than his actual age (3yrs 4m). However, his memory functions are very well-developed and he is also very adept at remembering names of people, recognising people, and knows perfectly which parents go with which child (even though he has only been attending his current preschool for 2 months).

In most areas, aside from having such incredible visual memory with regard to words, he appears to have a intellectual disability, and so my second question is whether it is possible for someone to have this strong memory function in terms of watching and recognising so many words, being able to rattle off subway lines and subway stations back and forth across Stockholm's entire subway transportation system, and yet still have  intellectual disability?

We as parents find it hard to know what to think regarding his disability. I am used to meeting and talking to adults with mild intellectual disability and people with low intelligence as well, and few of them are able to keep track of people and names and remember as many things at once as my son can.

ANSWER:
Thank you for your question. Your description of your son makes it clear that he possesses very good word decoding skills and good visual memory. Specific talents or so-called "islets of ability" are a common occurrence in cases of autism and these talents are often connected to a specific interest on the part of the person in question. Intellectual disability is a developmental abnormality that includes intellectual functional impairments with regard to deductive reasoning, planning, abstract thinking, sense of judgment, ability to study and ability to learn from experiences. Memory capacity naturally affects a person's intellectual function, but other important cognitive functions also play a significant role. Moreover, in order to make the diagnosis intellectual disability/mental retardation, the person must also exhibit deficits in adaptive function.
It is important for your son's cognitive development to be followed up, as this will also serve to clarify your son's specific development. In a recently study carried out by our research group here at GNC, we found that intelligence levels were not always stable over time in a group of preschool children with autism who were followed up 2 years after diagnosis. This was especially true of the group with delayed development at the time of the first test, where the intelligence spread 2 years later ranged from intellectual disability to normal intelligence.

Hedvall, Å., Westerlund, J., Fernell, E., Holm, A., Gillberg, C., & Billstedt, E. (2013). Autism and developmental profiles in preschoolers: stability and change over time. Acta Paediatrica, 103, 174-181.

EVA BILLSTEDT
 


We will reply to more of your questions next month!

Regards from the GNC researchers.


 

Page Manager: Anna Spyrou|Last update: 3/16/2017
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